Exploring Opportunities for Primary Outpatient Palliative Care for Adults with Cystic Fibrosis: A Mixed-Methods Study of Patients' Needs

Hobler, Mara R.; Engelberg, Ruth A.; Curtis, J. Randall; Ramos, Kathleen J.; Zander, Miriam; Howard, Shacole S.; Goss, Christopher H.; Aitken, Moira L.

doi:10.1089/jpm.2017.0259

Cited by 17 publications

(19 citation statements)

References 33 publications

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“…Primary palliative care, an approach in which CF providers learn skills to apply in routine care, may be effective in CF . The complexity of CF‐related symptoms warrants early integration of palliative care assessment and interventions as part of multi‐disciplinary care .…”

Section: Introductionmentioning

confidence: 99%

Effects of a primary palliative care intervention on quality of life and mental health in cystic fibrosis

Friedman

Linnemann

Altstein

et al. 2019

Pediatric Pulmonology

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Background: Despite the significant impact of chronic symptoms on quality of life with cystic fibrosis (CF), the role of palliative care in management of this disease is not well defined. The coping, goal assessment, and relief from evolving CF symptoms (CF-CARES) model is a primary palliative care intervention designed to provide chronic symptom management at all stages of the disease. The goal of this pilot study was to estimate the effectiveness of the CF-CARES intervention on improving chronic symptoms and quality of life for people living with CF. Methods: A structured assessment was used to guide referral to supportive services intended to address burdensome symptoms. Follow-up assessments were performed approximately 3 and 6 months later. Longitudinal regression analyses of changes in symptoms and quality of life were performed for all participants regardless of utilization of supportive services. Subgroup analyses were performed for subjects participating in mental health and alternative health services. Results: Forty-one subjects completed assessment and referral processes. The mean number of CF-associated symptoms decreased over time, as did respiratory symptom-related distress and depressive symptoms. Subjects utilizing alternative health services reported less psychological distress at follow-up. Among subjects with severe disease, mental health, and quality of life improved, especially for those using mental health services. Conclusions: The CF-CARES model resulted in significant mental health and quality-oflife benefits, suggesting the value of integrating symptom management interventions Pediatric Pulmonology. 2019;54:984-992. wileyonlinelibrary.com/journal/ppul 984 | Questionnaire 9-item scale; ppFEV 1 , percent predicted forced expiratory volume in 1 second; QoL, quality of life. Moskowitz and Yonker have contributed equally to this work.

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Section: Introductionmentioning

confidence: 99%

Effects of a primary palliative care intervention on quality of life and mental health in cystic fibrosis

Friedman

Linnemann

Altstein

et al. 2019

Pediatric Pulmonology

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“… 14 , 33 Studies in CF indicate unmet ACP needs and patient willingness to engage in ACP conversations. 7 , 9 , 31 , 34 Goals of care and ACP should also be addressed throughout the transplant process, from consideration of referral through post-transplant care, as new decisions are faced and goals may be everchanging. 35 , 36 Communication about goals of care between CF and transplant teams who comanage patients is essential, as is engaging individuals with CF and caregivers in effective goal-setting discussions.…”

Section: Resultsmentioning

confidence: 99%

Models of Palliative Care Delivery for Individuals with Cystic Fibrosis: Cystic Fibrosis Foundation Evidence-Informed Consensus Guidelines

Kavalieratos

Georgiopoulos

Dhingra

et al. 2021

Journal of Palliative Medicine

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Cystic fibrosis (CF) affects more than 70,000 individuals and their families worldwide. Although outcomes for individuals with CF continue to improve, it remains a life-limiting condition with no cure. Individuals with CF manage extensive symptom and treatment burdens and face complex medical decisions throughout the illness course. Although palliative care has been shown to reduce suffering by alleviating illness-related burdens for people with serious illness and their families, little is known regarding the components and structure of various delivery models of palliative care needed to improve outcomes for people affected by CF. The Cystic Fibrosis Foundation (CFF) assembled an expert panel of clinicians, researchers, individuals with CF, and family caregivers, to develop consensus recommendations for models of best practices for palliative care in CF. Eleven statements were developed based on a systematic literature review and expert opinion, and address primary palliative care, specialty palliative care, and screening for palliative needs. These recommendations are intended to comprehensively address palliative care needs and improve quality of life for individuals with CF at all stages of illness and development, and their caregivers.

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“…The survey included questions regarding ACP and care preferences (see Appendix). Survey questions were adapted from a prior study of patients with cystic fibrosis . Palliative care was defined as “specialized medical care that focuses on providing relief from the symptoms, pain, and stress of a serious illness, whatever the diagnosis.” ACP was described as a plan for the future that “includes discussion about the medical care you would want if you were too sick to speak for yourself (for example, whether you would want cardiopulmonary resuscitation [CPR], nutrition through a feeding tube, or care in the intensive care unit or a nursing home).”…”

Section: Methodsmentioning

confidence: 99%

“…Based on prior literature, a list of 10 barriers and 4 facilitators for talking about care preferences were provided to survey participants in table format. Participants were asked to identify whether each listed barrier does or does not keep them from talking to their doctors about their care.…”

Section: Methodsmentioning

confidence: 99%

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Perspectives on advance care planning and palliative care among adults with congenital heart disease

Steiner

Stout

Soine

et al. 2018

Congenital Heart Disease

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Background Patients with adult congenital heart disease (ACHD) report that advance care planning (ACP) is important, and that they want information about prognosis. However, recognizing importance and being willing to participate are different constructs, and how and when to begin ACP and palliative care discussions remains ill‐defined. Methods We conducted a cross‐sectional survey of 150 consecutive outpatients to assess willingness to participate in ACP, with whom, and important barriers and facilitators to these discussions. Results The majority of participants (69%) reported being willing to participate in ACP; 79% to have a meeting to discuss goals and care preferences; and 91% to speak to a clinician who specializes in palliative care. Being married and anticipating a shorter lifespan were associated with increased reported willingness to participate in ACP. The health care provider with whom most participants preferred to have these discussions was their ACHD clinician. Participants identified important barriers and facilitators to these discussions. Conclusion Patients with ACHD report being willing to participate in ACP and palliative care discussions. Patients prefer to have these discussions with their ACHD clinicians, thus ACHD clinicians need to be prepared to address these issues as part of routine care.

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Exploring Opportunities for Primary Outpatient Palliative Care for Adults with Cystic Fibrosis: A Mixed-Methods Study of Patients' Needs

Abstract: Patients expressed a need for and openness to palliative care services, as well as some reluctance. They appreciated clinician communication that was open, forthcoming, and attuned to individualized concerns.

Cited by 17 publications

References 33 publications

Effects of a primary palliative care intervention on quality of life and mental health in cystic fibrosis

Effects of a primary palliative care intervention on quality of life and mental health in cystic fibrosis

Models of Palliative Care Delivery for Individuals with Cystic Fibrosis: Cystic Fibrosis Foundation Evidence-Informed Consensus Guidelines

Perspectives on advance care planning and palliative care among adults with congenital heart disease

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